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Expanded coverage:
Disability Advocates Respond To "Ashley Treatment" Designed To Keep Girl Small

Parents Push 'Ashley Treatment' On Website; Disability Advocates Respond To Girl's Stunted Growth
By Dave Reynolds, Inclusion Daily Express
January 5, 2007

SEATTLE, WASHINGTON--When Inclusion Daily Express reported on November 1 that doctors at a the University of Washington hospital subjected a six-year-old girl with disabilities to experimental 'growth attenuation' treatment -- which included massive doses of the hormone estrogen -- in order to keep her 'child-size", the news barely made a hiccup in the disability community, let alone the public at large.

Reuters seemed to be the main, and nearly only, news source on the issue, distributing versions of the same story to newspapers around the globe.

A couple of avid readers commented on the IDE discussion board.

And that was about it.

But if you do a Google news search on "Ashley Treatment" today, literally hundreds of websites will show up -- and those are just the news sites.

Loads of disability advocacy groups and individuals are weighing in through press releases, editorials, email listserves, letters to the editors, and weblogs.

Why the difference?

Because the anonymous parents of the now 9-year-old girl, known only as "Ashley X", published their own website Tuesday -- to push the issue into our faces and those of readers, watchers and listeners around the world.

On their "Ashley Treatment" site, the couple explained that they decided to stunt their daughter's growth to "improve her quality of life", so she could be cared for at home indefinitely without having to use what they called 'impersonal' equipment such at mechanical lifts, to help her avoid the discomfort of menstruation, and reduce her boredom.

Because the high estrogen levels would speed up Ashley's puberty, her parents decided to have doctors perform a hysterectomy to remove her uterus, along with surgery to remove her breast buds so they would not grow -- noting that the family has a history of women with large breasts. They also chose to have the surgeon perform an appendectomy, 'since there is a chance of 5% of developing appendicitis in the general population'.

They couple said they published the website to draw attention to the treatment so they could help other families of what they call "Pillow Angels" -- those who cannot talk, eat, or move on their own -- so they won't have to institutionalize their children.

Regarding their daughter's dignity, they reasoned that she lacked the cognitive capacity to experience any sense of indignity, and wrote that "she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development".

Several disability rights groups, particularly in the United States, the United Kingdom, and Canada, have responded angrily to the news. Many call the treatment "abuse", "an abomination", "mutilation", and "Frankensteinesque". Some accused the parents of, among other things, violating their daughter's human rights by forcing her to remain a perpetual child -- a kind of "Peter Pan" for their own convenience.

"To make such a choice for their daughter is an abuse of this young woman's human rights and has worrying implications for other disabled people," said Andy Rickell from the UK disability charity Scope.

"This case marks a dangerous trend and a new low in the medical and ethical treatment of people with disabilities," wrote the Canadian Association for Community Living in a press statement. "It is tacit approval that people with disabilities, particularly those with significant disabilities, are not to be recognized as human in the same way others are. It is explicit approval that the bodies and lives of people with disabilities can be manipulated at others' will."

"We are saddened but not surprised by the fact that this was publicized and met with a great deal of public approval," said Diane Coleman, founder of the disability rights group Not Dead Yet, in press release. "The public is willing to sanction the murders of disabled children by their parents, so it’s hardly surprising they would rush to the support of parents and their medical partners in a matter like this."

ADAPT member Amber Smock of Chicago, Illinois, said: "I am angry that Ashley's parents, the medical establishment and society at large think it is acceptable to surgically and hormonally manipulate Ashley because the reality of her adulthood as a person with a disability is too 'grotesque' for them. With these drastic measures, her parents and doctors are physically reinforcing the disrespectful attitude held by many that people with disabilities are all 'childlike,' and can be treated like property or science experiments."

"The Ashley Treatment"
"Abstract--Attenuating Growth in Children With Profound Developmental Disability" (Archives of Pediatrics and Adolescent Medicine)
"Whose life is it anyway?" (The Guardian)
"Honey, We Shrunk the (Developmentally Disabled) Kid!" by Tom Shakespeare (BBC Ouch!)
'How can they mutilate Ashley?' (The Evening Standard)
"Ashley - the disability perspective" by Geoff Adams-Spink (BBC News)
Hormone Treatment Dehumanizing (Canadian Association for Community Living)
"ADAPT Youth Appalled at Parents Surgically Keeping Disabled Daughter Childlike" (ADAPT);&sort=D
Statement on "Growth Attenuation" Experimentation (Not Dead Yet)

What do you think? Have these parents and doctors gone too far?
Your opinion counts. Discuss this with other Inclusion Daily Express readers on our Discussion Board:

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